informational packet for medical professionals

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informational packet for medical professionals

Postby kat » Thu Nov 11, 2010 1:53 am

This is what I've got

pain scale from this site
pictures of pudendal nerve as it runs through male and female parts from this site
copy of the home page from this site (if mods find this appropriate) i like how precise it is and would like to use it
list of related symptoms from this site
list of misdiagnoses (vaginal dryness, yeast infection, constipation and so on)
copy of my personal op report
copy of my personal PT reports

I'd like to encourage medical professionals to be informed enough to point patients in the direction of this site instead of saying
(there is nothing wrong with you, it's in your head or I know you are in pain but have no idea what to do for you.)

I feel the medical history pages given to us from Conway, Hibbner and the other docs should be included as well in some way.
There should be a place on this site with the medical history questions available to be printed out so people have an idea of what to be thinking about as they are searching for treatments.
Conway asked me questions no other doc ever had and I'm sure Hibbner and the other docs are all the same way.
Lets try to compile a questionnaire people could print out so they are better prepared to talk to the docs they see.

Let me know what you all feel about this plan so far.
We should take the questionnaires the docs already created and include them on this site if we are allowed to. Otherwise, we can create our own.
The ones of us that have seen the docs and have had operations and procedures should do this for those just starting their PN journey.

This is just my opinion. Let me know your feelings.

Thanks to all on this site

Loves
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
 
Posts: 204
Joined: Fri Sep 17, 2010 3:44 pm

Re: informational packet for medical professionals

Postby Violet M » Sun Nov 14, 2010 2:33 am

Kat do you have copies of the list of questions you were asked? You could post them here and then people could add other questions. Some people have kept diaries or written up summaries of their symptoms before going to their doc. These are some of the items that could be included:

1. How long have you had pain?
2. Do you have any idea what started it -- is is associated with an incident, surgery, accident, etc?
3. What helps?
4. What makes it worse?
5. Describe the exact location of the pain.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Violet M
 
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Re: informational packet for medical professionals

Postby kat » Sun Nov 14, 2010 7:25 pm

Conway's copy of his questions is the one I plan to use.
It would help others just getting started with this issue to get in the right frame of mind as they go into talk to medical professionals.
I wasn't going to create my own.

I wish I could say I kept a diary, but my day is full of meds, PT, TENS units and exercise. I honestly don't take the time.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
 
Posts: 204
Joined: Fri Sep 17, 2010 3:44 pm

Re: informational packet for medical professionals

Postby Cora » Mon Nov 15, 2010 5:49 am

there is a site that is good to check out. THis woman is rockin and rolling with getting her mission going for fibromyalgia. Maybe we could model a doctor's packet like hers that she made. She sells it. Maybe the money could go to supporting HOPE. Anyway, she has great energy and passion for getting the word out about fibro and she came up with a description of how to say what fibro is in 30 seconds or less. Maybe we need that too. Her site is this: chroniclesoffibro.blogspot.com/

Cora
[color=#8040BF]Onset PN/PFD/centralized pain in Oct 06 after years of athletics,nursing career and dog training. PT for two years with improvement, now go for tune-ups and pain management. Stopped Cymbalta, was on M.S. Contin, then Kadian, and briefly Methadone for pain management, now off those meds and pain is well managed with Buprenorphine. Followed my pain management specialist.
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Re: informational packet for medical professionals

Postby kat » Mon Nov 15, 2010 11:18 pm

Cora

Thank you. That is what I was thinking as well. I want to generate a packet for HOPE to be able to distribute.
We need to spread the word and help others fighting PN.
You are very helpful.

Loves
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
 
Posts: 204
Joined: Fri Sep 17, 2010 3:44 pm


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